1st Oncology appt and additional subtype

Hi Rosedeec1bf9b  please do not apologise for having a moan, this is exactly the right place to come and off load. 

My lung sarcoma is rare, I was only the 2nd patient my oncologist had treated when I was introduced to her in 2014, so I do know how it feels to be the unknown.

It does feel like you get passed around a bit at the start of diagnoses and treatment, but you may find that after radiotherapy and surgery, you will continue appointments with your oncologist. They will be overseeing your treatment, and yes the MacMillan nurses you have been assigned are your go too. Please do call them for any worries you may have, they are worth their weight in gold! 

Parking at the hospital can always be a problem. My hospital allows cancer patients to park without charge, so it will be worth asking if your hospital also does this. 

SABR wasn’t around when I had my radiotherapy 11years ago, so it just shows how far cancer treatment has come. Good luck with the radiotherapy. Let us know how you get on. 

Hi

As with all cancer patients, you will see various consultant specialists in different fields, but they all make up the Disciplinary Team in Oncology.  After a patient has been seen by the various consultants and has had all the investigations, a definitive diagnosis will be made.  The team then have regular team meetings (MDT's) to discuss individual patient's diagnoses and which treatment plan is best for which type of cancer, because there are various types of lung cancer.  

It is a good sign you have been offered SABR as this shows your lung cancer is "early stage".  SABR is only given as a recommended treatment on lesions 3cm or under. 

I had SABR treatment for left lung NSCLC adenocarcinoma in December 2023, having been diagnosed in August 2023.  Part of my investigations showed that I have the KRAS gene, which means if I, god forbid, have a recurrence, I can go on to have a treatment of Sotorasib.  It is taken in tablet form and works by inhibiting the KRAS protein which is responsible for cancer growth.

Apart from tiredness and a slight loss in appetite, I was fine having SABR.  I had eight sessions spread over two and a half weeks.  All follow up CT scans have shown positive results.

In summary, you are monitored not by just one consultant, there is a team who are all there to work with what is the best treatment for you.  If they have recommended SABR treatment, that is good news.  SABR lets you get on with your daily life with minimum disruption, unlike invasive surgery.

Best wishes.

Ann

Thank you Chelle for responding so kindly.

i have a blue badge (wheelchair user), so parking is free fortunately.  It’s just a very busy car park and you always have to wait for someone to leave….

Thank you, Ann.

Yes, I’m fortunate that my left lung has been caught so early - thanks to the screening programme.

Thanks  for pointing out that I will still be under the MDT, so there is a continuity of care happening, which is reassuring.

Good too to hear how well you’re doing

I had a phone call yesterday afternoon offering me the planning CT for this morning, which I had.  And now I have the date of my first treatment - 15th December.  

It’s all now starting to feel more real, even though I knew it was real before….  I think because I have been fortunate enough to not have any symptoms, I haven’t felt as if I was ill.  I still don’t feel ill, but having a concrete treatment appt somehow puts it firmly in the reality frame….if that makes any sense….

That makes perfect sense Rosedeec1bf9b  it will probably be a while before it all sinks in. People very often feel in limbo at this stage, post tests and pre treatment. It’s just a lot of waiting. x 

Hi Rosedeec1bf9b 

I have the same subtype but my tumour is a larger (Stage 2) and SABR not offered. It's proposed to do chemo/immunotheraphy but my research, like yours has suggested that chemo/immunotherapy may not work. I don't know whether to ask for surgery first. 

Any thoughts you have would be welcome.

Thanks

Julie

Hi Julie, 

I’ve just seen your post here, having seen your thread and replied to you there!

It is so difficult making decisions in situations like these…..  Second guessing yourself and everyone else.

i was offered a date for surgery on 20th February and decided to delay it.  I live on my own, have physical limitations and the main person who can support me is my sister who is in Japan for most of March.   Because of my EDS I have never had an easy or straightforward recovery from surgery.

My MacMillan nurse supported my decision, but said the surgeon would push me hard on this, which he certainly did (though in his subsequent letter he said I was at low risk of metastases).

Of course, since then I have wondered whether I made the right decision.  I worry more now realising that referring me for another scan is taking longer than anticipated and surgery is unlikely to happen now til mid/end of April.

Hi

Thanks for getting back to me on both this and the other thread i posted in. You comments about the communcation skills of surgeons made me smile. I am never going to get the answers to my questions about the efficacy of chemotherapy and immunotherapy on our rare subtype. I have decided to go ahead with the suggested treatment and hope that the tumor shrinks and gives the surgeon better margins and gets and other cells that could be floating around my body. I see the oncologist again this morning and start the treatment tomorrow.

Hope you hear about dates for yhe CT scan and your surgery soon.

Julie

I am glad you have felt able to make a decision.  All good wishes for tomorrow.

i got dates yesterday - scan on 17th and telephone consult with surgeon on 24th.  If all still ok to go I will then get the date for my surgery.  At least having those 2 dates in my diary has made things feel more manageable